Personal Assistants For Couple Affected by Thalidomide

Roz and Bob initially managed at home themselves, then decided to review their support requirements

Roz Hepple and her husband, Bob, have both been affected by Thalidomide and have been volunteers for the Thalidomide Trust for many years.

Life at home can be pretty difficult – Bob is four limb deficient and Roz was born without arms – but the couple managed with Roz using her feet, until their work as volunteer visitors for the Trust made them think again.

“After talking to other people about how they live with their disabilities we decided we should take a good look about how life was for us, “ says Roz, “we sat down and looked at how we were really managing, and what our house offered us in terms of ergonomics. We were living in a village with a garden on three levels, and a bedroom above the garage – accessible via a small staircase.

Our dog used our garden but it wasn’t very easy for us, plus we needed to purchase an accessible vehicle but there was nowhere to park it. It was time to move.”

Managing while selling the house

“We put our house on the market but also applied for planning permission at the same time so that we could adapt it if we couldn’t find a suitable alternative.  It took us three years to sell our house, and the planning permission came through before we finally sold it – which was a definite bonus for our purchasers, who wanted to make a lot of the layout changes we’d been thinking about.”

“During the time before we moved, we were getting six hours of support a week through the carers’ budget from the local authority,” Roz adds, “I had written a book for the Trust about Direct Payments and how you can get support at home, which had been well received, so I knew a lot about getting support.”

“Our six hours weren’t working that well. We were using an agency and found that our support was never on time, or never arrived and there was no continuity.”

We were going to wait until we had moved house to apply for “Direct Payments” but as this was taking longer than expected, we decided to jump!  We’re pretty easy going and were prepared to be flexible – we just knew we didn’t want a ‘jobs worth’. “

Life with Personal Assistants

“We were a bit naughty in how we got our first PA, Angela”, laughs Roz, “She was working through the agency we used and had been coming to us over a few months – so we poached her!”

“Angela was a lovely, bubbly blonde – and a very adaptable multi-tasker.  She understood that we both had very different needs. She was with us for a year but then left to run a burger van! This didn’t leave us in the lurch though, she waited until we had recruited her replacement before she left us.”

“Our next PA was one we christened ‘PA from hell’.  She came from a retail background and had no disability awareness. Sometimes people who aren’t aware of what life is like with a disability can see some of our needs as ‘fussy’ or over the top – but it’s just what we need.”

“She worked with us for a year and it seemed to be going ok albeit with some ups and downs. Then, despite a review where she said the job was going fine, she was secretly looking for another position– and then announced she was leaving, with no warning. Communications had broken down between her and Bob and the atmosphere in our home became very awkward while she worked out her notice of four weeks. Luckily for us she was able to with immediate affect start her new job and left after two weeks.

That’s where life can be difficult with a PA – this is your home, you have to maintain, there is a line you don’t cross, because at the end of the day you have to remember, you are the employer, You need to be careful about getting too involved with them and their lives outside the work they do for you – keeping a healthy distance keeps difficult situations at bay.”

Recruiting a Personal Assistant

“There are two ways you can recruit,” says Roz. “You can either put an ad in the paper or work with your local Direct Payments support team. When we started fourteen years ago we were living in the local authority area of Darlington, and recruited with the help of our local Direct Payments support team, letting them field the applicants.”

“In the early days recruitment was a long, drawn out affair; it took a long time from short-listing applicants to us actually interviewing them. The Direct Payments people often sent us unsuitable people; and there was one time when I thought I was interviewing one person – and they’d invited someone else!

In 2008 we found ourselves recruiting again, not without similar issues. Our first choice from this round of interviewing became difficult to contact, so we eventually wrote to her and withdrew the offer of the job. Our current PA was our second choice but as she was doing her NVQ in her present job and we felt at the time she needed to finish it. We now found ourselves in a dilemma:-  Should we re-advertise? It was while I was speaking to a friend, who is also a DP user, that she suggested contacting our second choice and inviting her for a trial over a weekend, paid. She accepted, and we gave her all the jobs we’d had trouble getting our previous PA to do, explaining to her that if she found it difficult she should tell us and not just struggle on alone.”

“It was a great success and she’s still with us now. We have two PAs; our second one has now been with us since 2011.

Our Direct Payments are now funded by Durham County Council, but our payroll is still processed in Darlington, who charge us a monthly fee”

Being the boss

Managing a PA is a big responsibility and one that Roz and Bob take very seriously; “All our assistants are employed by us”, Roz explains, “Bob takes care of the banking and wages, whilst I keep the time sheets and deal with issues. Things rarely get to a serious point as we tend to iron out any issues at the time they arise.”

Payroll deals with any national insurance contributions, pensions and contributions we have to make to HMRC.

“ We make sure we do everything properly and have our own employers liability insurance. We take out the full policy, which could cover redundancy – as this is something your Local Authority may not consider. You have to think about the workplace pension and work it into your budget because not all Local Authorities will fund this.  We always keep 2 hours in reserve (also known as banked hours) to cover any emergencies or cover for staff who are staff off sick or on holiday.

One issue that has arisen for Roz and Bob has been satisfying an employee’s right to maternity pay and leave.

“Dealing with maternity issues was quite a learning curve for us” Roz reflects, “We rang our insurers – Fish – who advise you on maternity employment law. We had to conduct a safety assessment of the job and have had to provide a letter of entitlement and responsibility, which details, among other things, what our PA is not allowed to do whilst she is pregnant - like heavy lifting or handling. We then had to inform our social worker about the situation we were now facing. Extra funding would be needed short term, to employ someone to shadow her to do the tasks she was no longer allowed to do whilst still working, and then for maternity cover, which potentially could be up to 52 weeks."

“Keeping the job open has made it extremely hard to recruit anyone else. We live in a rural area – and if you’re asking someone to come out to you from town, they’re not going to do it for a temporary contract or shorter hours.”

Challenges versus benefits

Managing staff and all the issues that go with the responsibility of employment presents all sorts of challenges but Roz is adamant that there are more benefits than pitfalls:-

“There have been so many good things about having PAs” she comments, “For Bob, it’s given him more scope to do things outside the home environment; for me, it’s given me extra support with food preparation and shopping. My PA comes with me when I buy clothes so I don’t have to ask shop staff to get things down from racks and shelves. PAs also pack and carry your shopping for you – they really take the pressure off.”

“The downside of having PAs is that when things are quiet, like in the winter when you can’t get out, you can struggle filling the hours.

But as I’ve always said, ‘I’d rather live with a PA, than without!”

Tips for other beneficiaries

Roz and Bob would definitely recommend having a PA.

By employing a Personal Assistant, you are enabled to lead an independent and active life both within your own home and in the wider community.

Roz’s advice to other beneficiaries thinking about employing one is pretty clear:-

“Use your Direct Payment to pay for the help you need, “she says, “And then really take up the opportunity. Don’t feel you have to stay in, or behave in a certain way when they’re there – it’s all about your independence.

A PA is there to enhance your life, let them take the strain.”

For more information, visit our Employing A Personal Assistant section.